I seem to be able to do the job of an O.T and Speech Therapist without four years of training.

Zack's private speech therapist came round to see him at the weekend for another reassessment. He still likes her. She brought some puppet toys to show him. You should have seen him. He was lying on his back and went all still and quiet watching the toys. Then she showed him some crinkly silver paper which he tried to grab several times. The upshot of all this was that she noticed how much quicker his reaction to things like his toys was, and how now we need to push him to understand how objects are here one minute and gone the next. So there was lots of showing a toy and then hiding it. Then he got tired and did  a few show off yawns to get out of his therapy but all in all it was a good session.


I went to visit the O.T at the child development centre. Not the O.T that comes and brings Zack equipment for the home the other O.T whose role I am still unsure about. 


After telling her all about Zack and how he has no sensory integration problems (ie. He doesn't get freaked out by new textures, noises etc.) She told me how brilliant I was doing. Yes, well thanks, I seem to be able to do the job of an O.T and Speech Therapist without four years of training. I questioned their role and what they did for children and oh apparently they offer advice about sensory problems and also when the child goes to nursery they look at what equipment they need. Hmmmmmm. I see. Really. Then I just carry on doing what I am doing without any help. 


I then asked at what age do they normally see children. Oh, well that depends on the referral but they very rarely see children from birth it's usually when they get to the age of two. Oh for the love of God. (RANT ALERT) Surely parents need help from the beginning, they shouldn't have to roam around in the dark working it all out for themselves, researching information about their child's condition, reading books about how to help their child. Yet it seems that way. I think (and I am not blowing my own trumpet) that if it wasn't for me bringing the world to Zack we wouldn't have gotten where we are today. The only group that have been brilliant in their support, help and ideas has been the vision team. Everyone else needs to learn from them, if they did Warrington would have an amazing support service.


At the meeting I also asked about help with toilet training. Guess what, they didn't really know how to approach this and will speak to the specialist nurse. I was told that usually it just happens when the child is ready and you can talk to them about it. Yeah, okay, I'll ask Zack if he's ready!! I said that I know there are systems out there that can help children such as Zack and I am not going to have presumptions made about what he can and can't do just because he has profound needs. The way I see it is that unless you try you won't know. And it is this conclusion that I have now reached that I am no longer going to accept doctors, therapists or whoever suggesting that just because a child has severe disabilities means they won't ever do A, B, or C. They may not, but you should never not try. Why should we fail before we have even begun. Besides I know deep down that Zack is way brighter than people give him credit for and even if we don't do all the things that I might like him to try and achieve at least we've tried. And we will never give up. Both too stubborn for that.


Oh as a footnote. Last night he was in bed for 8.30pm and slept through, ahahahahahahahahah!!! I was so excited I didn't know what to do. So I annoyed Dan who told me to be quiet so he could enjoy his quiet time. Tonight he was in bed by 8.15pm, fingers crossed he sleeps through again. Zack that is not Dan, who is enjoying yet more quiet time.

I could tell by his face he was a little shocked.

The chair has arrived. The OT came with it last week and oh. My. God. It's bloody bright orange.


Both Zack and Dan hated it. Zack hated it as soon as he was sat in the chair and Dan hated it on sight.


I on the other hand remained hopeful that both of them would get used to it. I was right. Zack now doesn't mind the chair and Dan, well, Dan's kind of getting used to it.


It's called a Sunbeam chair, Sunbeam....more like bloody fluorescent orange beam. Here is a link to the website that supplies the chairs so you can see what I mean.


http://www.jcmseating.co.uk/pages/sunbeam.html



The idea of the chair is to provide Zack with the right support for his body. This way we he can sit in a chair that keeps him comfortable and doesn't make him work too hard to try and keep himself in an upright position. By doing this he can then be encouraged to use his hands more as he won't be concentrating on trying to right himself all the time. The other benefit is that it keeps him symmetrical so that as he grows we can try and avoid him getting curvature in his spine and keep him straight.


Dan's first meeting with the chair happened when the OT was still at our house setting it up. I could tell by his face he was a little shocked. He asked if Zack needed all that padding and she very nicely explained the reasoning behind the chair. Dan didn't look too convinced. But she did say to us that the Pant's is still very young and developing so he might not need as much as he gets bigger. Zack by this time was in the chair doing his panic hands, going red in the face and panting. He wasn't buying into this extra support business. 
The OT told us not to worry that most children hate the chair at first and to just try him with small bursts of it. Small bursts, he had a big blimmin' long burst of it the next day and was quite happy.


So far he has sat in his chair for some t.v watching. Eastenders until his Dad told him he wasn't to watch that rubbish and put Top Gear on for him. He has used it for feeding. He ate six spoons of chocolate pudding whilst in the chair. He has even had a sleep in the chair. Good old chair.










I still hate the colour. 

Zack's seizures have been increasing again

Zack is getting a new chair. The O.T (occupational therapist) came to see us to discuss what extra fixtures and fittings the Pants may need around the house. We talked about seating and she showed me some pictures of what is called the Sunbeam chair but shall be known to me as the ugly fabric chair. It has all the right padding and support to make sure that Zack is sitting correctly and not having to work to hard to keep his balance. The chair can also be put on a little stand so that he can sit at the table with us when we have our dinner. It looks very good but all I was thinking was who chose the colours, they are all so garish and will not go with my home colour scheme. Still, it's good that he is getting this seating so I'll just get past the bad colour choice.


I also asked her advice about car seats. Lately Zack has been getting very upset whilst in his maxi cosi seat. He has had it since birth and is usually okay in it, not moaning too much, but the last few times we have been out he has crunched up, started breathing really fast and then made a loud crying noise. He got so worked up that by the time you get him out he is sick. I imagined that it was because he was too big for it and probably uncomfortable in it. So I asked her to take a look. We popped Zack in his car seat, she took one look and said, yep, I think he is too big for this now. I think the give away was the fact that Zack looked like a squashed up fat child in the seat, even his cheeks were squished together.


Zack now has a new car seat. It's bloody huge and a pain in the arse to put him in as it is still rear facing. However, he seems happier in it and has not done any screaming. Yet. I tested it out when I took him to school on Wednesday. 


At school he learnt how to take his socks off his feet, well we helped him pull his socks off his feet. He also did his stretches and thought it was very funny when they did the riding the bike song. After all the stretching, singing and stirring of a bowl of soup (don't ask), Zack flaked out so we came home a bit earlier. We also brought back his first painting for his daddy to take to work.


Zack's seizures have been increasing again. We have asked to see the neurologist a bit earlier than our planned appointment. Dan spoke to him and he  said that there are definitely other things we can try for Zack. He was also pleased to hear that Zack is smiling and laughing. He suggested that this may be because his brain is beginning to compensate for the parts that are damaged or that the hypsarrythmia is getting a bit better, or it could be both. Either way it shows signs of development in Zack which is a good thing. I just don't like seeing him have the spasms again. I was getting to used to hardly seeing them at all. I have learnt that it can take a while for things to get right. With some children you have to add medications, up some doses, lower others before you can get some form of acceptable levels. Somebody did tell me that it is a rollercoaster of emotions and this is quite true. Just when you think you are getting somewhere you suddenly shoot back down again. But we are trying to remain positive and take encouragement from Zack.


Just too add coldsville has entered the house again!! I blame the infected children at school.